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Sunday, June 19, 2011

updates from the last few days

As most of you have read we finally got the results in. It has been a crazy couple of days. For those of you who haven't read my wife's blog. Here are the results. Eli has Complex 1 , Complex 3 and OXPHOS. In simple terms Eli has a progressive terminal disease. That right now we are waiting to get a plan of attack to help him. He also has many deficiencies in his system which isn't helping anything right now. Dr shoffner wants Heather and I to come and discuss the results and what is next. Unfortunately we are not going to be able to do that. So we have Elis pediatrician working with Dr Shoffner and some of the local specialist to put a plan in place to get all of his additional medications. Which there is a lot. The plan of care is going to greatly increased by the time we are done. It has been a long couple of days wrapping our heads around all of this. The report was 69 pages. Some of it was very complicated to read however the important stuff was very clear

It is something we will have to take it day by day. Live life to the fullest because we have no idea how much time we have or when it will get worse. It could be decades, years, months, days, minutes, even seconds. Right now he has been doing pretty well. So I try to think on the positive side and say when he grows up he will be something great. He is a fighter just like all of the other mito warriors out there. As a father I have to stay strong for our family and just live in the moment.

Will update later we are about to leave for the museum so hopefully will have some pictures to put up and a family update.